Caregivers UNITE!

Anne Frank

I was catching up with three friends whom as a group, have not met for several years. We are all in our fifties and sixties. The three of us are caregivers to our mothers who have survived their husbands for some years already. The oldest in the group was not in this situation as her parents had passed on some years back but she observed that it was common to find the `burden’ falling on single daughters to look after their aged parents. Statistically, 75% in this group are looking after their mothers who are in their late 70s to 80s.

I hope by sharing some of the struggles the caregivers in this group are facing, it will divide the burdens, struggles and challenges that other caregivers face with the hope that it will bring comfort and solace, possibly giving some respite.

Our group’s conversations soon went into how our mothers faced ageing and health issues, struggling to cope with day to day living. Although we laughed at the mind-blowing and mind-boggling situations in caring for our mothers, it was also a deep and constant struggle for us to cope on a daily basis.

One shared how her mother hoarded things in the house and they were items of no use or purpose. These things or items can be considered rubbish and cluttered the house. The house needs to be kept clean and safe so they (mothers) would not stumble over things or go in a frenzy searching for things they had misplaced in the clutter (a common happening nevertheless). Another shared how her mother had faeces on her hand after going to the toilet and when she tried to get her to wash her hands, the mother scolded her for being picky and a clean freak! The one with the oldest mother find it hard to keep her occupied through the day as she would be bored quickly from watching television, to doing jigsaw puzzles and then wants to walk around the house and do something when she was not able to do so unaided. When she tried to help her walk safely, she was chided for trying to be troublesome with her.

Oh what wonderful and lovely mothers we have. No, I am not trying to be sarcastic here. This is how we single daughters cope with mothers having dementia or illnesses that have robbed them of their ability to reason, to think clearly or logically. To look beyond their failings and see the person in them that is still around in whatever ways possible. We often say we do not know whether to laugh or to cry in our struggles. We will also let it out when talking to family or close friends about how ridiculous or tough it has been as it was a form of relief but we struggle not to say too much as it is our mothers that we are talking about. Being daughters, we struggle with whether we have failed or did not do enough as we see them deteriorate, and whether we were wrong to talk about their `unsavoury’ behaviour to others.

One of the hardest illness to cope with as a caregiver, is dementia. To see your loved ones gone into a different time zone and perhaps, dimension. A dimension where human reason and logic do not exist, where confusion and abstract ideas flourish. Another world has been created in their minds and eyes. Some would be filled with suspicion, with darkness and evil forces in their thoughts. Some with utter joy at the sight of flowers, cute pets, cartoons, and balloons, much like children. Some have a combination, depending on their mood swings. And sadly, some will not remember their own flesh and blood right before their eyes, and treat them with disdain or apprehension.

I believe there are many, not just single ladies, who are struggling as caregivers of parents, grandparents, spouse or siblings. It is a very lonely and hard journey. As the person whom they care for are often unable to appreciate them or even worse, curse them and speak ill of them in front of other people. Some may ask to be killed or to let them die as they do not want to suffer. Day in and day out you hear cries such as, “Let me die!”, “Why let me suffer?”, “I am going to die!”, “Why are you so cruel to me?” Furthermore, the people around you (relatives included) may pass remarks and comments that only add to the pressure and pain of caregivers. Many of you suffer in silence.

I would like to let you know, you are not alone, and if you need to talk to someone, drop me an email and we’ll see how we can share/divide our `misery’.

“I have learned now that while those who speak about one’s miseries usually hurt, those who keep silence hurt more.”

― C.S. Lewis

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